National Core Indicators-Aging and Disabilities (NCI-AD) A View of State LTSS Systems n4a, Philadelphia, PA, 7/13/15

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1 National Core Indicators-Aging and Disabilities (NCI-AD) A View of State LTSS Systems n4a, Philadelphia, PA, 7/13/15

2 2 NCI-AD Background

3 What is NCI-AD? 3 Quality of life and outcomes measure Focuses on older adults and adults with physical disabilities being served by state LTSS systems Data are gathered through in-person surveys of individuals receiving services Grew out of a concern about the limited information currently available to help states assess the quality of LTSS services for seniors, adults with physical disabilities, and their caregivers

4 What is NCI-AD? Collaboration between the National Association of States United for Aging and Disabilities (NASUAD) and Human Services Research Institute (HSRI) Supported by participating states and a development grant from the Administration for Community Living Multi-state collaboration of state Aging, Disability, and/or Medicaid agencies Grew out of the National Core Indicators (NCI) focused on adults with Intellectual/Developmental Disabilities Collaboration of HSRI and the National Association of State Directors of Developmental Disabilities (NASDDDS)

5 Domains Community Participation Choice and Decisionmaking Relationships Satisfaction Service and Care Coordination Access Self-Direction of Care Work/Employment Rights and Respect Health Care Medications Safety and Wellness Everyday Living and Affordability Planning for the Future Control

6 Purpose Gather feedback directly from service recipients Assesses quality of life, service satisfaction, and outcomes Supports state Aging, Disability, and Medicaid Agencies interested in measuring the performance of their state LTSS systems Assists states to improve the quality of services and supports provided to individuals

7 Development Timeline 7 1 st Draft of survey ready for review Focus groups with service recipients in Massachusetts Draft survey finalized for pilot states (7 revisions) Began pilot in three states Steering Committee discussion of preliminary pilot results and needed revisions Draft survey finalized for small sample pilot in Georgia (2 more revisions) Jun 2013 Jul 2013 Sep 2013 Nov 2013 Dec 2013 Jan 2014 Aug 2014 Sep 2014 Dec 2014 Jan 2015 Mar st meeting with Steering Committee to discuss each potential indicator Steering Committee met to discuss survey Small Sample testing with services recipients in Maine End of pilot, data sent to HSRI for analysis Draft survey finalized for small sample pilot in Georgia (2 more revisions) Final survey ready for nationwide rollout

8 NCI-AD: The Tool Pre-survey Form Used to setup interviews, for use by the interviewers only Background Information (21 questions) Demographics and personal characteristics: gathers data about the consumer from agency records and/or the individual Consumer Survey (86 (51 proxy) questions + 2 optional) Includes subjective satisfaction-related questions that can only be answered by the consumer, and objective questions that can be answered by the consumer or, if needed, their proxy Interviewer Feedback Sheet Asks interviewer to evaluate the survey experience and flag concerns State-specific questions can be added

9 How It Works Commit to TA year and 1 year of surveying Develop a project team and contact state agency partners (Medicaid, Aging, and Disability) Begin monthly technical assistance calls with NASUAD and HSRI Work with NASUAD and HSRI to design a sample of at least 400 older adults and individuals with physical disabilities receiving publicly-funded services. Including: Skilled nursing facilities Medicaid waivers Medicaid state plans MLTSS populations State-funded programs, and Older Americans Act programs

10 How It Works Cont Contract with a vendor or develop an internal team to conduct interviews Gather pre-survey and background information from state administrative records Hold 1 ½ - 2 day in-person interviewer training in state Conduct in-person NCI-AD interviews with survey participants State compiles final data in ODESA to share with HSRI HSRI interprets data and provides a state-specific report and state-to-state comparison report All data is published on

11 NCI-AD Website Houses: Project overview Reports Webinars Presentations Staff contacts State-specific project information

12 12 Large-Scale Pilot

13 Pilot 13 3 pilot states: MN, GA, OH Recipients of aging services through HCBS Waiver Recipients of aging services through OAA Recipients of non-dd disability services through HCBS Waiver Each state to collect at least 400

14 Sample Overview 14 State 1: Total N = 806 Waiver: Under 65, classified as disability in waiver: N = 110 (14%) 65 and older, classified as older adults in waiver: N = 245 (30%) OAA and some state services: N = 394 (49%) State 2: Total N = 357 Disability in waiver: N = 118 (33%) Older adults in waiver: N = 170 (48%) OAA: N = 67 (19%) State 3: Total N = 409 Disability in waiver: N = 94 (23%) Older adults in waiver: N = 272 (66%) OAA: N = 37 (9%)

15 Background information 15 Who the person lives with Alone Spouse/ partner Parent Child Other family Friends Congregate setting Other State 1 27% 9% 0% 8% 4% 0% 37% 14% State 2 52% 20%* 21% 5% State 3 56% 16% 4% 9% 10% 2% 0% 3% * State 2 s administrative data did not allow for distinguishing whether person lived with a spouse, any other family, or friends Usual living arrangement Own/family home or apt Adult family home Assisted living Other senior housing/ retirement community Nursing facility Other State 1 40% 3% 48% 4% 2% 4% State 2 81% 8% 0% 0% 0% 10% State 3 98% 0% 2% 0% 0% 0%

16 16 Background information Snapshot of Health 100% * based on 2 states Missings excluded from denominator 90% OAA PD Waiver Aging Waiver 80% 70% 60% 50% 40% 30% 20% 10% 69% 50% 49% 10% 6% 23% 13% 15% 16% 11% 3% 2% 1% 3% 53% 40% 25% 5% 31% 12% 43% 39% 19% 7% 28% 22% 61% 36% 75% 7% 15% 30% 23% 43% 0%

17 How Person Heard About Services 17 50% 45% 40% 35% 30% 30% 25% 20% 15% 10% 5% 10% 8% 3% 1% 0% 4% 5% 9% 8% 10% 11% 0%

18 Community Participation 18 Person participated in some social activity in last 30 days (either inside of home or outside of home): No Why hasn t participated: Did not want to, Health/physical limitations, Transportation, Accessibility Person participated in some social activity in last 30 days, by program: Yes State 1 15% 85% State 2 28% 72% State 3 41% 59% OAA PD Waiver Aging Waiver State 1 89% 82% 83% State 2 75% 72% 71% State 3 63% 68% 56%

19 Community Participation 19 Person gets to do things outside of home when they want to: Why not: Health/physical limitations Transportation Accessibility Cost No Sometimes Yes N/A - Doesn't want to State 1 17% 15% 66% 2% State 2 11% 9% 76% 4% State 3 17% 15% 58% 11%

20 Choice and Decision Making 20 Person can eat meals when they want to No Sometimes Yes State 1 23% 3% 75% State 2 9% 2% 88% State 3 4% 4% 93% Person can get up and go to bed when they want to No Sometimes Yes State 1 5% 2% 93% State 2 2% 5% 93% State 3 1% 2% 97%

21 Relationships 21 Can see or talk to family as often as they want to No Sometimes/some family Can see or talk to friends as often as they want to Yes State 1 1% 3% 95% State 2 10% 9% 82% State 3 8% 9% 83% No Sometimes/some family Yes State 1 2% 3% 95% State 2 7% 6% 87% State 3 7% 8% 86%

22 Satisfaction with Services 22 General satisfaction with services: Very dissatisfied Somewhat dissatisfied Neutral Very satisfied with services, by program: Somewhat satisfied Very satisfied State 1 1% 2% 2% 15% 82% State 2 2% 3% 5% 19% 70% State 3 1% 4% 3% 27% 65% OAA PD Waiver Aging Waiver State 1 86% 71% 83% State 2 75% 59% 78% State 3 57% 52% 71%

23 Satisfaction/Needs 23 Services meet needs: No Some needs/services Yes State 1 3% 6% 90% State 2 2% 12% 84% State 3 3% 16% 80% All service needs met, by program: OAA PD Waiver Aging Waiver State 1 92% 91% 91% State 2 81% 81% 88% State 3 83% 63% 85%

24 24 Coordination of Care Person felt ready/comfortable to go home after rehab/hospital stay: No In-between Yes State 1 5% 4% 91% State 2 13% 4% 83% State 3 8% 8% 85% After leaving rehab/hospital, someone followed-up to make sure the person had the services/supports they needed: No Yes State 1 8% 70% State 2 16% 79% State 3 18% 73%

25 Coordination of Care 25 Person can reach case manager: No Sometimes Yes State 1 10% 3% 82% State 2 4% 8% 87% State 3 6% 11% 81% If the person has unmet needs, has their case manager talked to them about service that might help? No Maybe, not sure Yes DK/Unclear/ Refused State 1 9% 14% 64% 14% State 2 36% 13% 49% 3% State 3 36% 9% 52% 3%

26 26 Access Home Modifications Needed 25% 20% 15% 13% 15% 10% 8% 7% 9% 9% 5% 4% 0% Grab bars Bathroom mods Specialized bed Ramp Remote monitoring ERS Other

27 27 Access Assistive Devices Needed 25% 20% 15% 15% 10% 5% 8% 10% 4% 7% 10% 1% 6% 0%

28 Access Transportation 28 The majority of people have transportation to get to medical appointments/pick up their medications. However, fewer people said they have transportation to do things outside of home when they want to (not to medical appointments): No Sometimes Yes State 1 19% 16% 65% State 2 13% 14% 73% State 3 14% 18% 68%

29 Safety 29 30% of people are afraid of falling. Of those afraid of falling, someone has worked with the person to help reduce that risk/fear: OAA PD Waiver Aging Waiver State 1 61% 48% 53% State 2 50% 34% 56% State 3 56% 58% 54%

30 Health and Care Coordination 30 Person can get an apt to see primary care doctor when needed: Sometimes/ rarely Usually Yes, always State 1 1% 3% 95% State 2 7% 9% 83% State 3 4% 5% 90% Person gets enough info and support to manage chronic conditions: No Maybe, some Yes State 1 1% 4% 95% State 2 5% 6% 86% State 3 2% 7% 90%

31 Preventive Health Care % 90% 80% 82% 75% 70% 60% 61% 64% 50% 40% 30% 30% 32% 20% 10% 0% Physical exam Hearing exam Vision exam Dental visit (6 mos) Pneumonia vaccine (ever) Flu shot

32 Wellness 32 Person has trouble remembering basic things: No Sometimes Yes, often State 1 66% 21% 13% State 2 60% 23% 17% State 3 51% 32% 17% Talked to someone about this trouble: No Yes State 1 53% 47% State 2 37% 63% State 3 41% 59%

33 Rights and Respect 33 Person feels they have enough privacy in their own home No Yes State 1 9% 91% State 2 6% 95% State 3 5% 95% Person feels paid support workers treat them with respect: No, never Usually Yes, always State 1 0% 6% 94% State 2 1% 6% 94% State 3 2% 8% 90%

34 Self-Direction of Care 34 Person helped plan services: No Yes, some Yes, all State 1 12% 16% 67% State 2 30% 19% 48% State 3 25% 16% 53% Person did not help plan any of the services: OAA PD Waiver Aging Waiver State 1 2% 21% 18% State 2 37% 17% 37% State 3 27% 18% 28%

35 Employment 35 Most people do not work 97% However, many people would like a job (6%, 16%, 14%) Yes, would like a job, by program: OAA PD Waiver Aging Waiver State 1 1% 19% 5% State 2 7% 26% 12% State 3 9% 29% 9%

36 Everyday Living 36 Of respondents who need help, do they get enough help with basic self-care needs (ADLs)? No Sometimes Yes, always State 1 13% 7% 80% State 2 5% 14% 80% State 3 5% 14% 80% Always gets enough help with basic self-care: OAA PD Waiver Aging Waiver State 1 69% 85% 85% State 2 71% 80% 85% State 3 73% 75% 83%

37 Everyday Living 37 Of respondents who need help, do they get enough help with everyday activities (IADLs)? No Sometimes Yes, always State 1 8% 7% 85% State 2 7% 10% 83% State 3 5% 13% 82% Always gets enough help with everyday activities, by program: OAA PD Waiver Aging Waiver State 1 67% 91% 92% State 2 81% 80% 85% State 3 72% 76% 86%

38 38 NCI-AD National Rollout

39 How States Will Use NCI-AD Data Improving the quality of services Communicating with service recipients, families, and advocates Identifying issues states can flag for deeper analysis Communicating with lawmakers and state legislature Comparing programs within the state Comparing state programs nationally Tracking changes over time

40 State Participation

41 41 Two Rounds of Data Collection

42 The Future 42 Approximately 5 new states each year June 1 st May 31 st year long data collection 3-4 months for data cleaning and analysis Reports issued in November and December

43 Questions? 43 For Additional Information: Kelsey Walter, NCI-AD Project Director, NASUAD Julie Bershadsky, NCI-AD Project Director, HSRI

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